The Search for Evidence-Based Practices for Individuals with ASD Continues

This post is by guest blogger, Samuel L. Odom, Ph.D. Dr. Odom is the director of the Frank Porter Graham Child Development Institute and professor in the School of Education at the University of North Carolina. He is the author or co-author of many refereed journal articles and editor or co-editor of seven books on early childhood intervention and developmental disabilities.

Many efforts exist now to locate practices, intervention approaches, and treatments that improve the development, functioning, and well-being of individuals with Autism Spectrum Disorders (ASD) and their families. Inspired by the model established by the Cochrane Collaboration (http://www.cochrane.org/ ) in evidence-based medicine, investigators from a variety of organizations (i.e., the National Autism Center, National Professional Development Center on ASD, What Works Clearinghouse) have conducted and are continuing to conduct systematic reviews and evaluations of the research literature to discern approaches with sufficient scientific evidence of efficacy to support their use. Such reviews have practical importance because they guide practitioners, physicians, and family members in their selection of practices to use with individuals with autism. They also have social policy implications in that they may guide the selection of services that received funding from social service agencies.

A research group at the Vanderbilt Evidence Based Practice Center has just published three such reviews in Pediatrics that contribute substantially to the growing literature on evidence-based practice. Following a standard and rigorous evaluation process, this research group reviewed the literature from 2000 to 2010 and reported their findings for Early Intensive Intervention (Warren et al., 2011), Medical Treatments for challenging and repetitive behavior (McPeeters et al., 2011), and one additional specific medical treatment, Secretin, thought to have generalized effects (Krishnaswami, McPheeters, &Veenstra-VanderWeele, 2011)

Early intensive interventions for children with ASD are behavioral or developmental in nature. Such interventions focus on improving the intellectual, communication, social, and adaptive functioning of young children with autism. In their review, Warren et al. (2011) examined the evidence for three comprehensive treatment approaches as well as a set of other approaches for which less research had been reported. The Lovaas/UCLA model has the largest set of research literature, with one study being judged of good quality, and a set of other studies being of lesser quality but documenting strong effects for the model. The Lovaas/UCLA approach is an intensive, individualized behavior therapy model that emphasizes application of applied behavior analysis principles and discrete trial training. The Early Start/Denver model also had one randomized study and a second supportive study documenting efficacy. The Early Start/Denver Model also employs applied behavior analysis principles within a functional developmental conceptual framework. The third set of intervention practices focused on training parents to deliver primarily applied behavior analysis interventions in the home and community to promote communication skills, IQ, and adaptive behavior. Three studies of fair quality substantiated this intervention approach. Warren and colleagues concluded that the early intensive interventions, as a group, have promising outcomes but the evidence of efficacy is at this point modest. They noted that such interventions have “significant potential” but require further research to establish efficacy more strongly. To quote the authors of the review, “At present, a paucity of research leaves us with individual studies that suggest promising outcomes but a critical need for replication, extension, and controlled studies of the factors that moderate treatment outcome. Thus, the low and insufficient strength of evidence reported in this review should not be interpreted as evidence that the interventions are not effective but, rather, as encouragement for additional research.”

In their examination of medical treatment, McPheeters et al. (2011) note that prescribing medication for co-morbid symptoms associated with ASD (e.g., challenging behavior, stereotypic behavior) is a common practice but reviews of evidence for outcomes have been limited. They examined the literatures for antipsychotic, Selective Serotonin Re-Uptake Inhibitors (SSRIs), and stimulant medications.

Two antipsychotic medications studied most often, risperidone and aripiprazole, targeted challenging behaviors and repetitive behaviors. Randomized studies of sufficient but varying quality documented the positive effect of both medications on ratings of targeted behavioral outcomes for children with ASD, but these studies also consistently documented adverse side effects such as weight gain. McPheeters et al. proposed that the reports of such consistent side effects might limit the use of such medications for all but those “individuals with significant impairments or risk of injury.”

Less or weaker evidence were found for the latter two forms of medication. One acceptable randomized study did document the effects of the SSRI Fluoxetine on repetitive behavior and a second randomized study of fair quality documented the effect of SSRI citalopram on challenging behavior. McPheeters et al. concluded, however, that the overall evidence for the use of SSRIs was insufficient. Similarly, although the RUPP Autism Network study of the effects of methylphenidate (a stimulant) on challenging behavior did reveal some positive effects, albeit with side effects, McPheeters et al concluded that the evidence for stimulants was insufficient. As a general conclusion, the authors proposed that literature addressing the use of medications for children with ASD lacks sufficient quality, studies has often been funded by pharmaceutical companies (without independent replication), and medications have not been compared with, or assessed in combination with, behavioral interventions that have the same targeted outcomes.

In a third review, Krishnaswami et al., (2010) examined the research on the use of Secretin for the treatment of communication impairments, symptom severity, and social deficits for children with ASD. Secretin, a medication used to treat gastrointestinal disorders and pancreatic functions, is also theorized to affect the central nervous system and act as a neurotransmitter. Its proposed use for treatment of ASD was based on an uncontrolled case series of three children. The Krishnaswami et al. literature review identified eight studies meeting their inclusion criteria, with quality of the studies ranging from good to fair. Across studies, no positive effects for use of Secretin were found. This was the most unambiguous finding of the three reviews by this group.

The three reviews conducted and reported by the Vanderbilt Evidence-Based Practice Center contribute to the ongoing knowledge about the “state of the art” in interventions and treatment for children with ASD. Their rigorous and conservative evaluations highlight the practices that are beginning to come forward as efficacious for individuals with ASD (e.g., some early intervention models, antipsychotic medications), the implications of employing some efficacious treatments (e.g., severe side effects), and treatments applied in the past that now have strong evidence of non-effects (i.e., Secretin). Importantly, these reviews speak strongly to the importance of future, high quality research in both the behavioral and medical treatment areas.

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I am concerned about the singular focus on ABA approaches. This approach is not effective with high order thinking. And I have found that children do not learn to read with this very fragmented approach to skills.
While not a formal study we have been working with Boston University on a cognitive, language based approach. Since our collaboration with Boston U began 1 1/12 years ago, my son who was not reading is now reading at a beginning 3rd grade level with comprehension.
This approach needs replication and expansion.
best
Dave May

Hi Dave, I agree that the primary focus on ABA misses a lot of things. However, ABA is very effective with a variety of behaviors and I don’t think it’s use should be abandoned. Effective treatment is likely going to require several different interventions that target specific skill sets. I would be very interested to learn more about what you are doing when you say cognitive language based approach and if you have any outcome data on this method. This sounds very promising and I might be interested in doing some research in my area on what you’re doing in Boston. Thanks
Amy

Yes, intensive early intervention is very effective and highly cost efficient. Anything that lessens the severity of autism saves the govt lots of money for yrs to come. If only they took the long view and did more to support these efforts. I think the AS insurance reform efforts are forcing the issue to the forefront, where it belongs.

The widespread use of anti-psychotics is so sad. You are right, the side-effects are horrendous. I see ASD kids everywhere who are morbidly obese with vacant expressions. We must do better than this. Plus these drugs only cover up the problem, doing nothing to treat the cause. Biomedical interventions are aimed at treating the underlying condition and are safer than anti-psychotics. Please attend a DAN! conference and learn more. The mainstream must catch up to our families, we need a comprehensive research investment on these interventions now.

Katie . . I totally agree with everything you said . . I have been SCREAMING for help with my 7 yr old grandson for 4 years now! Nobody in the Canton, Ohio area knows how to deal with Asperger’s . . he has just been put on medicine after medicine . . and put in a special school where he is what they call “held” daily . . I dont know who is angrier . . him or me! PLEASE SOMEBODY . . ANYBODY PLEASE HELP . . my grandson is now obese from the meds and HATES school! Please call me at (330) 361 1984 with any suggestions . . Thank you, Donna DeMartino

What is even scarier is what is “proof”. My child has lactic acidosis, but does NOT have mito???? “Only 1% of ASD kids have mito” where I live. And the terrifying thing is – the person who said this is a big deal in the mito world, but only does frozen biopsies. This person is holding strictly to “genetic mito” and not “mito dysfunction”. Sadly, we don’t in Cleveland or Georgia and cannot get to either with our insurance (or our private income). Mito strictly genetic-big-deal-idiot wouldn’t even listen to the fact that my child wouldn’t walk before b12 and ran afterward.

THIS IS THE “PROOF” WE DON’T NEED. Do a thorough investigation on institutional bias and stay far, far away from frozen specialists.

Until we find out what causes autism, all we can do is treat the symptoms and help children and adults affected with autism/aspergers, live happy, functional lives. One thing is for sure, Early EFFECTIVE Intervention helps!http://www.abadiary.wordpress.com

I have a son with Aspergers who is taking risperdal and citolopram. These medications have helped but nothing is helping with anger and obsessive diorder issues. Please advise what suggestions you may have. Thank you.

@Katie, I’d be interested in hearing what biomedical interventions are successful at helping kids on the spectrum. We have an almost 18-yr-old daughter w/PDD-NOS. (She was not diagnosed as being on the autism spectrum till the end of her 9th grade year b/c she’s so high functioning, in spite of being taken to autism experts during the 7th grade @ the suggestion of her child psychiatrist, whom she’s seen since the 3rd grade.) She has a high IQ, but slow processing speeds, ADHD, depression, mood disorder, some OCD (not repetitive behaviors, but wanting to do things the way SHE wants to do them, perfectionism, difficulty transitioning, etc.) & other neurological “glitches” including Central Auditory Processing deficits (tho audiologist wasn’t sure if results might be attributed to ADHD), convergence excess (eye muscles have difficulty focusing from near to far & vice versa). She’s done well academically b/c of her IQ & will be attending college in the fall. She’s tried >30 Rxs (SSRIs & other antidepressants, stimulants, antihypertensives – b/c stimulants made her even more angry, especially when she was “coming down” from them, Strattera, Risperdal, Depakote, & finally, the “magic bullet” of Abilify, which helped the most w/the anger, so she could go off the antihypertensive, which calmed her but didn’t help her focus, & then she was able to take stimulant Rx for her ADHD to focus better) She currently takes a combination of 5 Rxs to treat her symptoms (Prozac, Wellbutrin, Ritalin LA, Abilify, & Yaz – which is actually birth control, but not used for that purpose; it’s used for mood regulation. Yaz was the final puzzle piece to helping her moods.) Risperdal did cause her to gain weight quickly (she was on it 1 yr till Abilify); she was thin before Risperdal, then while on it, became medium-sized. Abilify didn’t cause her to gain weight, at least not noticeably like Risperdal. She is still at a healthy, medium-sized weight like her neurotypical older sister (also thin before puberty, but now a healthy, medium-sized weight – but thinner than her younger sister. But there’s no way to know whether she’s thinner b/c she’s never been on Risperdal/Abilify, or b/c the younger one takes after her Caucasian dad’s side while the older one is between her Chinese mom’s & Caucasian dad’s sides.) Both girls are thinner than many peers, b/c so many people in the US are overweight), but the one on the spectrum has to be careful how much she eats, or her belly starts to protrude. Without Abilify, her 4 sisters’ & her parents’ lives would be miserable, as would hers, as she was intensely angry frequently w/o it. Even w/it, she will throw a tantrum here & there, (like a toddler – lying on the floor & pounding on it, screaming &/or crying &/or making other angry noises), tho they are less frequent & less intense the older she gets. So Rxs have helped us cope over the years. Prior to seeing the psychiatrist, we did all the “right” things, but her behaviors were still disruptive to the family. Even with Rxs, her behaviors were – & still are – tho she continues to make prorgress every year, disruptive, but much less so than if she did not take Rxs. Any biomedical intervention suggestions are welcome! I don’t like that she’s on so many & such powerful Rxs, but the alternative is that she wouldn’t be able to function as well as she has. (In public school w/a graduating class of 450, a cheerleader – tho she’s not BFFs w/any on the squad b/c she’s so different, does track, & did well enough academically – & performed well enough in interviews! – to earn several large scholarships. I know w/o Rxs, she wouldn’t have been so accomplished; her symptoms/behaviors would have been worse, which would have made her depression worse b/c of the way peers & teachers would have reacted to her.)

I think you can see how desperate parents are for biomedical research and interventions. Please change the research paradigm from focusing only on behavioral or pharmaceutical interventions!
Too many kids are not making progress with this approach.

Parents are making tortured choices over anti-psychotics everyday. They do not want to use these drugs, especially when the underlying biological problem can be tackled in a different way. Autism is not just a brain disorder manifesting itself behaviorally- for so many kids it is a total body disease. The Secretin issue is over 10 yrs old! Now you need to study ivig, iv glutatione, the specific carbohydrate diet, anti-infammatories for GI pain like pentasa an so on…..

Hey Katie I couldn’t agree more! I hear from parents all the time whose kids have had remarkable changes just by starting the specific carbohydrate diet. The next are of major medical research is going to be the gut brain connection. I actually wrote a book all about the SCD diet and how to get started which you can check out on my blog.

The Tomatis Method has been around for more than 50 years and is well documented.
I am a Solisten (by Tomatis) provider and have had very strong results with anxiety issues, sensory-integration problems and improving auditory processing. This program is based in remediating problems in the auditory system, which is a very robust system, that not only works on listening, but also balance, bone conduction of sound and the energy stimulating components of the auditory system.
programs like Solisten are becoming more widespread with our new understanding of neuroplasticity. the other strength of this program is that it is a passive program. it is sound-based so the person doing the program wears headphones but can do other activites like games while they listen.